New DSM-5 Criteria For Autism -- Who Will Be Left Behind?

When news broke that the autism spectrum categories of Asperger’s disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would get subsumed into the wider maw of a general “autism disorder,” people worried. They worried about autistic people who are quite verbal or who have typical cognitive skills. What would happen to individuals whose autism doesn’t manifest in those terms as profound? The biggest concern was a new category for the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, social communication disorder. Would people like my son, diagnosed with Asperger’s and whose autism includes echolalia, anxiety, motor deficits, repetitive behaviors, learning differences, and other features well beyond the social, get rolled into what looks like a flimsy, catchall not-safety net of “social communication disorders”? And what other kind of communication is there if not social?

Based on early reports, the concerns were legit. One alarming presentation at a January 2012 conference in Iceland claimed that only 45% of people diagnosed with Asperger’s disorder or PDD-NOS would retain an autism spectrum diagnosis under the new guidelines. Those findings were preliminary and controversial, but further worrisome conference reports trickled in, all suggesting that the new autism diagnostic criteria proposed for the DSM-5 would exclude a good-sized percentage of people currently diagnosed on the autism spectrum.

Then a peer-reviewed version of the study presented in Iceland emerged in March 2012 suggesting that the new criteria would be pretty good at excluding appropriately people who aren’t on the autism spectrum but have limited ability to capture people who are. According to that study, the autistic people who would be overlooked under the new guidelines happen to be those without intellectual disability and who would fit the current criteria for Asperger’s disorder or PDD-NOS. People like my son.

Each of these studies had some limitation–the choice of population, not originally designed to evaluate DSM-5 criteria–that made their conclusions wiggly. Now there’s a new study out, one packed with data, focused on three clinical populations with different features, assessing how well the new criteria compare to the old in capturing autistic people and excluding the non-autistic. The headlines promise us that we will see “less impact” with the new definition or that the proposed guidelines “won’t miss autism cases” much more than the old ones. That, of course, begs the question of why we’d need to change the criteria at all.

But a review of the paper (abstract here) calls into question blithe assurances that people who might fit current Asperger’s and PDD-NOS diagnoses have nothing to worry about. What the authors really found was that the new criteria could end up excluding about 1 out of 10 children who meet the existing criteria for spectrum disorders. Given the oft-trumpeted 1 in 88 with autism in the United States, that rate of exclusion of people who should be included translates into a tens of thousands of individuals. And let’s not forget that the existing criteria, according to this study, correctly identify those who have autism at a higher rate than the proposed criteria do.

Where the old and new might distinctively part ways is in how well they exclude people who don’t have autism from receiving an autism diagnosis. The old criteria don’t do this as well, although how well depends on the specific population and diagnosis. From where I’m sitting, it looks like we’re making an untenable bargain: missing out on more people who have autism to avoid misdiagnosing people as having it when they don’t. The people we miss will live with an unrecognized disability that interventions and supports could help, and the people diagnosed with it who don’t have it will receive therapies that may or may not help them. Is no better option available? I think there is.

In their discussion, the authors make the following worrisome and strange observation:

Given concerns that the restricted and repetitive behavior requirement might lead to reduced identification of children previously diagnosed with ASDs under DSM-IV and possible misclassification as social communication disorder, we examined why some children with PDDs did not meet the DSM-5 criteria. In all three groups, most children who did not meet the criteria did so because they did not demonstrate the required impairments in social and communication functioning, and not because they did not meet the restricted and repetitive behavior criteria. In fact, few children did not meet the restricted and repetitive behavior requirement in DSM-5. These results suggest that few children with ASDs are likely to be misclassified as having social communication disorder and lend further support to the addition of the restricted and repetitive behavior criterion.

If I’m reading that reticulated verbiage correctly–and I tried it before, during, and after coffee–some children who had pervasive developmental disorders failed to meet the new DSM-5 criteria for autism because they did not have the “required impairments in social communication and functioning.” Yet they tended to meet the repetitive and restrictive behavior criteria, which was unexpected following a report finding the contrary. It’s been my experience that those behaviors themselves can impair social communication function, so it’s difficult for me to see how a clinician draws a clean line between, say, “repetitive questioning or extreme distress at small changes” (under repetitive/restrictive behavior) and “difficulties adjusting behavior to suit different social contexts” (social communication). And what happens to children–this study did not address autistic adults–who slip through a diagnostic crack because of this failure to meet the social communication criterion?

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Yes, I have asked them and have read what they have to say about it. It’s not a monolithic opinion one way or the other, but I’ve read from some autistic people that a label is useful for shorthand recognition of others who are like them but not in the clinical sense, per se … but as I said, opinions vary.

Yes, of course autism doesn’t and never did belong in the DSM. Psychiatrists have taken overcontrol of a disorder that should be handled by medical doctors(who understand what autism is). It’s not a mental disorder but a metabolic one that affects every organ in the body. One would have to ask why they are making these changes in the DSM-5. Could it be to lowe the epidemic numbers since the CDC came out most recently with 1 in 88 childen?(and that’s from 2008). I believe many children will no longer be eligible for autism services if the present changes are approved. It will be a total disaster for many. Maurine Meleck SC grandmother to 2 vaccine injured boys with encephalopathy.

Interesting article. Working with Autism, located in Los Angeles, has helped hundreds of children with an Autism Spectrum Disorder to achieve their maximum potential for independence. www.workingwithautism.com

My children both have significant social communication difficulties and display fixed and repetitive interests.

My son has a diagnosis of autism – he is at university, He has a list of comorbid diagnoses including hyperaccusis, prosopagnosia, topographagnosia, dyspraxia, hypermobility……. Having the ASC diagnosis is what gives him access to the support he needs for his comorbids as well as his ASC, before diagnosis he had virtually no support.

My daughter is also academic. She has no diagnosis of an ASC but has even more “comorbids” – severe dyslexia, developmental coordination disorder, pain amplification syndrome, syaesthesia, echolalia, IBS ……….. the list goes on. We know she is on the spectrum but nobody is willing to look. She gets next to no support and without the recognition that her disabilities are part of how her ASC presents she never will. Nor do I think that most of her problems can be seen in isolation – her IBS, pain amplification, synaesthesia and DCD are all known to be linked and need to be worked on together because they all involve her sensory systems but until she has an overview through an ASC diagnosis she will never have the opportunity to explore ways to improve her situation with professionals who understand her difficulties and she will live in pain as she has for all of her young life.

Donna Williams describes autism as a “friut salad” of sensory experiences – she sees autism as the root cause of the neurological differences she has but her presentation of autism is determined by her reaction to those sensory differences. Each person with an ASC has a different set of sensory differences and so presents differently even though the core features and cause remain the same.

Thank you once again for stating issues so clearly! I for one would be excluded, but it is the diagnosis that saved my job when I was bullied by a co-worker who took advantage of my social blindness to set me up. It also has allowed me to get counseling for skill development, and to feel better about my memories of childhood and young adulthood confusion, isolation, and hurt.

The problem is baby-with-bathwater, and a misdiagnosis is better when erring on the side of treatment availability rather than exclusion of someone who needs supports.

Believe it or not I just found out about this today by my son’s school psych/counselor. My son received the Aspergers diagnosis when he was four. He is now eleven and in his first year of middle school. He’s having a hard time as it is and the thought of him losing any support for his conditions (ADHD, PDD, repetitive questions, anxiety) leaves me in disbelief.

Could it be that this revision came about because of the increase of kids on the spectrum that grew in recent years and the questions and criticism of the prevalence of ASD put the APA in an awkward position to answer how and what causes ASD and the spectrum? Ex: Me: “Why does my son have Aspergers Syndrome?” APA: “What Aspergers Syndrome?” Yeah, on paper the decrease of ASD and AS looks great but it hides the truth.

Hello Emily Willingham I am a senior college student majoring in Early Childhood/ Special Education. This semester I have been taking a class on Autism, EBD, and PDD/ NOS. One of the lectures we discussed about this topic. My professor, peers and myself were having the same wonders as you have. What are going to be the major changes since the diagnosis of Aspergers syndrome is going to go away. My question is will this alter IDEA as well since that states the laws that accomodate these types of diagnosis? Will accomodations for both students and parents be altered too? If you could respond and let me know your thoughts I would appreciate it!